The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) causes pronounced, debilitating fatigue that is not alleviated by rest, along with muscle and joint weakness, pain, cognitive difficulties and can be worsened through mental and physical exertion. However, it is also without an aetiology, and there is little consensus amongst both medical and patient spheres as to what CFS/ME actually is. In this thesis I draw on interviews with people with CFS/ME and participant observation in a patient-led support group in order to explore the way in which CFS/ME shaped participants' identities and narratives of the self. I argue that participants moved through two stages that I call 'The Disrupted Self' and 'The Realigned Self'. Falling ill with CFS/ME rapidly disrupted participants' understandings of the bodies, their position within their family and the community, interactions with doctors, and all the usual markers on which they had previously formed their self-identities. In this state, I argue that participants and those with whom they engaged viewed both CFS/ME and my participants as liminal, 'betwixt and between' (Turner 1969) social roles and contemporary New Zealand ideals of illness, the individual, and the 'sick person'. As the initial disruption and confusion of falling ill subsided, however, my participants worked to develop a new secure self-identity, the 'Realigned Self'. They move into a normalised long-term liminal state by prioritising their health, adjusting their expectations of their body, developing their own conception of the aetiology of CFS/ME and forming a positive narrative of their new lives. This identity work utilised wider cultural ideals about the active, responsibilised and authentic self; common to late modern contemporary life (Beck and Beck-Gernsheim 2001, Desjarlais 1994, Giddens 1991, Rose 1996). Yet this realignment was often not reflected in the views of my participants' friends, families and doctors. This illustrates the diverse perspectives and different degrees of liminality that exist within experiences and narratives of CFS/ME and contested illnesses.